010 - Emotions, Updates, and Cars
Real Chemo Starts Wednesday
The last month has been emotional; I’ve felt alone, scared, hopeful, grateful, sad, mad, frustrated, lucky, and a slew of other emotions. Along with not feeling physically great after my first dose of chemo and growing stem cells — I’ll go more into that later — but the motivation to write has been really difficult to find. I miss my family so damn much. It kills me that I don’t get to read and tuck Sloan into bed every night. I can’t believe that I have been away from my son for more than twenty-percent of his life. I knew that this would be difficult — both the transplant and being away from everything that matters most to me. I haven’t started the former, but the latter has been far more difficult than I could ever imagine.
I apologize for not being the best at the updates. One of the things that has been hard from a motivational space is that writing and editing takes a fair bit of time and cognitive effort. Over my hospitalization, I am going to try and spend thirty minutes a day doing a quicker and shorter update. There will be days where I wont be able to get anything out — just a guess based off of my chemo schedule directly below. I recently re-read my schedule and learned that not only do I get chemo every day — so that’s exciting.
Health Update
Prior to getting admitted to the hospital and getting the first dose of chemo, I needed to shave off my stem cell playoff beard. As I started to shave off my beard, I was inspired by Formula 1 driver Valtteri Bottas and Randy Johnson and decided to go full send.
The next morning, I was admitted to the hospital for thirty-ish hours to have a triple lumen catheter placed and get my first dose of chemo to start the stem cell mobilization and collection process. Quick aside — I was really freaked out about having three catheters (trifusion/triple lumen catheter) sticking out of my chest. I thought that I was going to hate the trifusion, but it has been almost three weeks since it was placed and it is the best thing ever. I never get stuck for an IV or blood test anymore and it is really nice.
The chemo definitely made me nauseous for a week and I vomited a few times, but that dose of cyclophosphamide was not that bad in terms of side effects. Following the dose of chemo, I started getting three daily injections of Granix (GCSF) — stimulates the production of HSCs in bone marrow. The GCSF has been the worst part of the process thus far. Five days after I started getting the shots I could barely walk because my hips, femurs, ribcage, and back all felt like they were ready to explode. I only had to deal with this for another two days because my daily labs indicated that I was ready to start the collection process. I got hooked up to the apheresis machine for just over 5 hours harvesting stem cells, they went off to get tested/counted, and I went home — waiting for the call to see if I needed to come back to collect again the next day. Later in the evening, I got a call from the lab telling me that they needed 5 million stem cells for the transplant and they were able to collect 10.6 million. I was so happy — not because my body kicked ass at making stem cells, but that I didn’t have to get any more of the GCSF shots — so the bone pain would go away — and I didn’t have to sit in an infusion center for another 5 hours on Friday.
Waiting Period
The last ten days or so, have been both super boring and eventful. A few mornings ago, I looked in the mirror after washing and drying my face to see that eighty percent of my Bottas/Johnson mustache disappeared in the previous process. From the point that I could grow facial hair, I have always had something — whether a (horrendous) goatee when I was younger or my beard since 2011. Until my dose of chemo, even Whitney had never seen me without a beard.
As long as I can remember, I have loved cars and racing (because of my Dad). Throughout my childhood, I would hear stories about legends like Carroll Shelby, Ken Miles, Dan Gurney, Pete Brock, Bruce McLaren, Mario Andretti, Bob Bondurant and more. One of my nurses during my overnight stay, started talking to me about Formula 1 and she mentioned that there is a Shelby museum in the area. I looked it up and they are only open on Saturday’s for six hours, but the listed exhibits were incredible — we had to go check it out. This last weekend my Dad and I drove out to the Shelby American Collection in Boulder and it did not disappoint.
I saw the GT40 MK II that Ken Miles drove to win the 12 hours of Sebring, 24 hours of Daytona, and a controversial second place at the 24 hours of Le Mans. There were Cobra race cars and GT40s driven by Miles, Gurney, Brock, McLaren, Andretti, Bondurant, and Jack Sears. I got chills as I stared at the doors from the crashed prototype GT40 MK IV that Ken Miles crashed and died in during testing in August of 1966. The automotive history contained in this Boulder warehouse is truly extraordinary. If you are ever in Denver and are remotely interested in history or cars, you should absolutely take the time to go to Boulder and visit the collection.
The Rubber Meets the Road
I have been here for almost a month, and the real work is about to begin. As you can see from the schedule I shared above, on Wednesday (5/10/2023) I will be admitted to Presbyterian St. Lukes’ bone marrow transplant unit. Wednesday is Day -6, and I will get two doses of different chemotherapies until Day -1. The following day (5/16/2023) will be my stem cell birthday — the day that I get my stem cells back and my new life without MS will begin.
I am terrified, but I am being treated in one of the top BMT units by a world-renowned physician. I truly would not be here if it were not for each and every one of you. Thank you from the bottom of my heart for joining me and my family as we go through this process. Your love and support means far more than you will ever know. Thank you.
Love and health to you all.
Aaron
You are doing great! Stay positive!